Thing1

One Fine Day

/ Picking My Battles

Monday night we sent in Thing1’s enrollment fee to UMass Amherst. It was a huge moment but not just because he had finally decided which direction the next step in his future.

He had been back on steroids for a week to give his newest drug a chance to kick in. For four days his energy and resulting mood had been on the upswing. We stopped wondering if he’d need a medical deferral for school.

Thing1’s doctor has told us numerous times that Ulcerative Colitis is a permanent diagnosis, but it seemed as if the drugs and new diet were finally starting to control it. We bypassed hope and moved directly planning for the next few months.

Tuesday he took the last dose. After work we drove an hour to Clifton Park, NY to get a suit on sale for prom. As I drove, he talked about his plans for the prom at his school and the one at hers. A week earlier the long drive and fitting would have drained any energy and interest in conversation, let alone planning.

Wednesday was glorious. I used my day off to fax forms to schools and take care of car inspections. I listened to radio talk shows and reveled in the sunny first day that truly felt like spring. We closed out the day with burgers and silliness around the table at a local haunt. It was a celebration of normal.

It was a celebration of a new journey.

We got home while it was still light out. Thing1 claimed the coveted corner section of the sectional. I got out my laptop to follow up on a few issues at work. Thing2 channel surfed as he worked on his Star Wars fan video script. Chris stretched out on the other sofa for a well-deserved post-burger nap. Thing1 went to bed earlier than the night before. All of us chalked his exhaustion up to his busy day, refusing to entertain any possibility that the glorious string of days was an anomaly.

This morning when he came downstairs, his complexion was paler again. He silently made his diet-friendly breakfast and went to sit on the sectional. I hated the question I had to ask.

“Yes,” he answered. “One step forward, two steps back.”

“I’m sorry, Buddy,” I said, trying not to call a 6’3” gentle growing giant, ‘Baby’ as I’m often tempted to do when his mind or body is hurting.

Thing2 was almost ready for school, and I ducked into the mud room and angrily kicked off my slippers.

“I give up,” Thing1’s voice echoed around the corner. I wanted to swear at something on his behalf, but instead I slid into my clogs and yelled to Thing2 to get his shoes on.

I know parenthood doesn’t come with a finish line. It’s journey. You stay with it — sometimes a little slower — for as long as there’s breath and love in you. I keep wondering, though, if you get to a point where you automatically have a useful answer for the difficult moments.

“It’s a half step back,” was what I finally came up with. I don’t tell him everything’s going to be okay anymore. I know it will, but he’s been looking for real hope and not just flashes of it for a while now. Predicting a rosy future without knowing the solution isn’t optimism. It’s dismissive of his perspective which, while often hampered by youth, is his and which his experiences validates. “I’ll call DHMC,” I said.

Together we wondered if we needed to find a new strategy. Should we talk with our doctor(s) about alternatives such as Cannabis Oil that has been recommended by other people with UC? Should we try the next drug with a 40% success rate on the list? Thing1 finished his breakfast and got up to put his dishes in the sink where they will stay until Thing2 remembers to empty the dishwasher so discussion of staying up later on a school night can ensue.

The only strategy I could devise does not include swearing at the heavens or doctors or my life or Thing1’s. It does not allow giving into tears of frustration once I dropped off Thing2.

“I’ll call and keep calling, Buddy,” I told him, peeking around the mud room. “You call me if you start to spiral or need to come home during the day.” He nodded and started packing his bag for school.

As we have been reminded so often this winter, chronic disease, like life, is a journey. We’ve travel together for a while now. We do have our own paths, and there will be more time in our lives that we’ll navigate them independently than as a team. In these rough stretches, however, I’m sticking close. I making sure that he knows we’re working for answer and that, even with all the steps backwards, we won’t let him give up on the journey.

A Birthday Oddity

/ Picking My Battles


I honestly wanted to do nothing more than absolutely nothing yesterday. 

Yesterday, I woke up as a square.  An odd square.  A product of two odd primes. It’s the fourth time I’ve been the square of primes, and, in all probability the last, as I’ll have to be 121 to celebrate the next truly odd birthday.  For this birthday oddity I’d planned a trip to the University of New Hampshire for the last college visit before my first son has to figure out which dotted line he’ll sign. 

But that wasn’t what made it odd — or wonderful.

For the past two weeks Thing1 has been dealing with anemia brought on by his disease. He could not tolerate a drive of any length, so we had postponed the UNH visit already.  The newest drug, however, seemed to hit pause on his symptoms, and his affable nature had re-emerged over the last day or two. We knew this was the last best chance to go.

We got Thing2 to school and then headed down to the hospital. Thing1 needed bloodwork to check trough levels for one of the five drugs trying to control his auto-immune disorder.  It was already 9 by then, and Thing1 was ready for Breakfast Number 2 — a side effect and a sign he was starting to feel more himself. 

Treating the day like a field trip day (if it were run by an really over-indulgent teacher), I took him to our favorite diner in Bennington (my next blog will be titled ‘Diners I have Known’). We’ve been going there since Thing1 was in a car seat carrier, and my eyes started sweating as I watched my gentle giant pick out two entrees for a ‘snack’ (although it could have been tears brought on by the impending dent in my wallet). 

“Mom,” he said in that tone that said other people could see me getting emotional as my baby prepared to leave the nest.  There would be a few more warnings.

After breakfast we headed east toward the other side of Vermont and then to the east side of New Hampshire.  

We stopped for a break during the three and a half hour drive. A girl playing scratch tickets, reminded me of a failed lesson in probability from another road trip a decade ago.  On a whim, I bought a ticket, thinking he’d be my good luck charm again. Ten years ago, I’d told him we’d paid a tax on people who are bad at math and wound up winning on three $50 scratch tickets in a row. I’d chalked it up to some ‘magic’ which had everything to do with being with my seven-year-old and nothing to do with Math.  Yesterday I lost, of course.  Thing1 is too old and skeptical to channel that kind of magic anymore, but we were both laughing as I scraped the silver goo off the losing numbers. He’s still my good luck charm.

It had been a long time since I’ve heard Thing1 really laugh. 

We got UNH and asked our questions before walking around.  Thing1 loved it and was even more undecided about his future. A few more drives around the bucolic campus, we headed back to meet the Big Guy and Thing2 in Vermont for dinner. 

It poured most of the time until we got near the Vermont border.  It rained from Bellows Falls to Londonderry and got foggy as we headed over Bromley mountain to Manchester. 

My body was getting weary from the travel and from the constant travel and worry of the last few months. It was as if a day of not worrying — of seeing Thing1 happy and debating over pleasant aspects of his future —  had let my muscles relax too much for a moment. 

When we got the the restaurant, Thing1 mentioned a worrying symptom that had appeared, and we knew the tension release was temporary.  In reality it’s always temporary, but it is always welcome.  

When we got home, I got my sketchbook, planning to doodle and promptly passed out on the sofa with Thing1 next to me and eleven year old Thing2 draped over the cats that came to sit on my legs.  I woke up long enough to send Thing2 and myself to bed for the dreamless, satisfying sleep that only an exhaustingly perfect day can produce. 

And the oddest thing was that it was the best present I hadn’t even thought to ask for.

The Scattered States of Thing2

/ Picking My Battles

Thing2 at the ER

Thing1  was diagnosed with an autoimmune disorder almost 2 years ago now. We knew the diagnosis would come with big changes to his life, and this winter we really got to understand what it means to live with and care for someone with a chronic illness.

We were still somewhat prepared for it.

What we weren’t prepared for was going through very similar routine with Thing2. After several months of ER visits and tests and flu‘s, we now find ourselves between a number of diagnoses, including a possible tickborne illness.

 Thing2 has found himself and completely unfamiliar territory. My superhero whose used to jumping over tall rock piles in a single bound it’s only found himself with barely enough energy to walk from chair to bedroom.

Except during the worst of the pain, however, he still my superhero. I still see his enigmatic little smile, and he still finds ways to experiment, even if it’s only with making movies with special on the iPad (full disclosure: I could not do it) or testing theories about how your atoms are not really touching your brother that he heard on Cosmos (science hurts sometimes).

I would donate an organ if I could make him better tomorrow, by doing so, but, as Thing1 has Learned over last year, what doesn’t kill you doesn’t just make you stronger, it also makes you smarter.

Breathing Room

/ Picking My Battles

At the beginning of this year, Thing1’s autoimmune disorder hospitalized him with an intense flare up and, not to be left out of the fun, promptly Thing2 contracted Influenza-A that, along with a lymph node inflammation painful enough to prompt two separate diagnoses of appendicitis earned him an overnight ticket to the pediatric ward. As a result, almost every week of our 2018 calendar has been dotted with nights in the ER, overnights at the hospital and follow-ups at various doctor’s offices. Last Thursday marked my first day off in weeks that didn’t include a rush to the ER or a four hour round trip drive across the state to a specialist, and I didn’t know what to make of the unexpected breathing room.

For weeks, the voices in my head that run an internal dialogue about art and literature and school shootings and the homeless population and, you name it have been replaced with instructions. Log when you last gave Tylenol or ibuprofen. Call for the new prescriptions. Did T1 have 32 ounces of water or 16? When did T2 poop? Check his weight. Call the insurance company. Call the doctor. Call the insurance company. I wasn’t numb, but I was a robot. Calculating but not thinking, especially if it meant engaging in worry which is all too natural for me (it could be an Olympic sport).

The robot didn’t have much extra processing power for art or writing, and February was burning away without any pictures to show for it. Even a conversation with a fellow artist about drawing in the down times at waiting rooms didn’t get my pencil or brush moving.

There was breathing room, but for some reason, I was afraid to rake that first breath.

A few nights ago, I decided out the iPad to work on a page for Dweezil’s To-Dos, a book about a little boy with too many projects (don’t ask how I get my inspiration).

Inking and coloring over the scanned drawings is methodical. Robotic. It’s not particularly creative a lot of the time. It’s basically just drawing lines – filling in the space between points.

It’s not creative, but it is meditative.

In the meditation, however, the robot slowed down. I inked and colored page 6 six different ways, and the machine started to power down. My eyelids felt heavy, and the iPad fell from my hand. The thud of the Otterbox on the floor jolted me awake again, and, rebooting, I took in a gulp of air and opened a file to start page 7.

A Straw to Grasp

/ Picking My Battles

High Afternoon, 5×7, Watercolor

We had stayed over night near Dartmouth-Hitchcock hospital for medical and weather-related reasons, and the roads to the highway were still icey enough to keep me from enjoying the views, so Thing1 and I talked about his auto-immune disorder and how he will handle these emergencies next year when he’s on his own and about his upcoming college decisions.
I was about to take a slower road but Thing1 gave an annoyed snort.

“Can’t we take 91?  If we get back any later, I’ll  miss work, and I already missed my midterm.”

I was a bit surprised that he would want to work when I knew he was feeling shaky but decided we’d have that argument when we got home. He was not about to let it go, however, and, after expressing an unwillingness to ruin a perfect attendance record at work for weather or illness, he talked me into letting him go. 

 I got on the next ramp for 91 South. I was not sure that he had the energy, but still I told him, “I could not be prouder of you if you had gotten into Harvard.”

“I didn’t apply to Harvard, Mom.” 

The  sardonic tone always gets my eyes to roll to the heavens which is how I was unexpectedly fully able to take in the winter fantasy that flanked us on both sides of the highway.  After the last week of worry, it was almost as lovely a happy straw to grasp as the realization that my sick boy still had enough energy and sense of humor to be a smart ass (I don’t know where he gets it).

A Tale of Country Kitties

/ Picking My Battles

One of the facts of country life is that other critters live in the woods with your pets. Snoop, our fat black feline god of pleasure found out in August that fishers weren’t as easy to escape as bears, and we saw him no more.

We all mourned him – especially Thing2 who spends more time on the floor with the animals than anyone else in the family.

The house mice tried to feign sympathy, but there was no mourning period in the nooks and crannies behind the walls. We knew we needed a new mouser.

Thing1’s girlfriend’s (yes you read that right) family owns a few barn cats who, in addition to being excellent mousers were prolific breeders this summer. So a few Saturday ago after I got off work, we decided to see if any of the kittens could be coaxed into the slothful life of a housecat.

We had two semi-willing takers (bribed with a bit of catnip) and named them Lady Jane (because she was so grey and seemingly dainty) and Gentleman Jim who seems more like Jim-Bob now.

We got them home and Jim-Bob promptly swatted Katy-the-Wondering-Dog’s nose, confirming her opinion that cats are freaking crazy and making us wonder if a barn cat could be happy as a housecat.

It took them less than an hour to convert.

Jim-Bob unlocked the age-old wisdom of cats that tells them that humans are bad hunters but excellent servants and sampled every lap and couch. Jane — not sure if she or Katy would be the bigger wimp — held back a bit, waiting until bedtime to snuggle up with the human of her choice (Thing2 in this case).

There’s something magical about an animal that can live in the wild but still prefers to occupy the laps of very unmagical humans. I don’t know if it was magic or just the vibration from the purring, but it didn’t take us more than an hour to realize how much we had missed having cats, even if only for a month or two.

Decisions, Decisions 

/ Picking My Battles


Like most families in the US with a high school senior in the house, we’ve acquired an impressive stack of college brochures over the last few months since Thing1 took his SAT’s.  

T1 is very methodical in his evaluations of potential schools, but when we opened a flyer from the University of Chicago, Thing2 introduced a foolproof criterium for putting a school in the ‘must apply’ pile.

As it happens, the library at U Chicago looks strikingly like the dining hall at Hogwarts when photographed in bad light.  Recognizing that life is full of difficult decisions, Thing1 is still reading the fine print and trying to figure out if it goes on the ‘more research’ pile.

Thing2 is trying to decide if he wants the school put him in Slitherin or Gryffindor.  

From Mac on the Occasion of his 17th Birthday

/ Picking My Battles / Leave a comment

For Mac on the Occasion of his 17th Birthdayweb

 

Wanting to protect him in his formative years, I’ve never written Thing1’s name on this blog. On the occasion of his 17th birthday last week, however, Thing1 went on a walk-about up the back of Mount Equinox, the highest peak of the Taconics. It was from the top of the Equinox, about 4PM, that he sent me the photo that inspired this painting.

Mac – short for MacLean is as independent-minded as you’d think someone with a name like his might be, but he’s also something I’ve never been.  

He’s brave. Not fearless – but brave.

On the way up the mountain, he texted a few photos and the occasional weather report –  ‘a storm is passing and it’s so cool – don’t worry, Mom’.  His phone ran out of battery before he could text about the bear that crossed his path on the way down the mountain, but neither a lack of communications or a close encounter of the furry kind sent him scurrying to our doorstep.  The only thing that brought him off the mountain seemed to be the acknowledgement that, as it got darker out, his mother would be doing what mothers do best – worrying.

When he got back, he showed us the pictures he’d taken and told us of everything he’d seen — the abandoned farm, the gates of the monastery that sits midway up the mountain and the animals that had crossed his path.  He ended his story with plans for a next hike and an invitation to join him on a future adventure, and I realized we’d received the best possible birthday present from Mac on his 17th birthday.

We heard a kid who could acknowledge the reality of unexpected dangers on a hike while refusing to let fear keep him from the path.  And I knew his invitation wasn’t a cry for help but an encouragement to join him on a new adventure.

Creative Blocks and Rocks

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5 8Dweezil

Back in April, just about the time I was trying to untie my creativity from a paralysis of over-analysis and get the last few pages of The Truth about Trolls laid out, Thing2 was exploring his and putting my resolve not to limit it to the test. 

His spring time creative effort led to a rock pile in the middle of his room, the fruits of a “quarry” he and a couple friends had started near the kids’ Lord of the Flies training ground in the woods behind our house.

That was three weeks ago. The rock pile is still there.

He’s cleaned his room. I have cleaned his room-a bit. Laundry has been done. Baths have been had. But that rock pile is still there.

At first thing to wanted to hang onto it. Then he was afraid he wouldn’t clean it up the right way. 

It was a story writing itself (Élly has been very understanding, as long as her pages keep developing). 

Thing2, aware that the rock pile and the absurdities of our undeclared battle are serving as inspiration, is more determined than ever that it should stay. To his credit, however, he has moved it out of the center of the room so the rest of us can get from point a to point B without breaking or next.

I’ve decided to exercise my mom authority and remove the “inspiration” as soon as he goes to camp or I finish his story, whichever comes first.

 

In It Together

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DSC 0039

My sons are the center of my life.  They are the center of my husband’s life. 

Today, Congress began changing the future drastically for my eldest son by endangering his ability to obtain insurance when he is an adult. 

Today Congress rolled back Obamacare, and with it, protection for millions of people with pre-existing conditions (replaced with high risk pools).  My son is one of those people. He was diagnosed with an autoimmune disorder (a lifetime diagnosis) that requires medications that would be unattainable for us without insurance. 

He’ll be a man soon, and, again – through no fault of his own –  he may find it more difficult to get coverage or possibly even job, since he will have to evaluate the laws in each state and not every employer will want to cover hires in his situation. It will  Even so, he’s lucky compared to the millions of Americans who will lose insurance outright. He’s still on our insurance plan, and we’ll keep him there as long as the law allows.

Jimmy Kimmel hinted at some of this the other night in his emotional monologue. He briefly touched on the fact that, prior to the ACA, a child like his would have reached his lifetime insurance cap before he left the NICU. If that child had appendicitis, or a broken bone, or cancer, that cap would have left many parents bankrupt at best or burying their child at worst — even if they had insurance.  

I have thought a lot about those other parents in the months since our son was diagnosed. When we get our meds, I silently thank our company for making it possible and then shake my head that anyone in a country as rich as ours might have to watch their child suffer or even die.  I shake it when I wonder how many people die prematurely because they don’t have access to the same healthcare we do, and I wonder how we benefit as a society from treating children and poor people like disposable objects. 

I call my representatives. I donate. And I shake my head. But today I’m done shaking my head.  I’ve thought about moving our family back to a country with stronger healthcare, but I’d still be shaking my head at the drugstore, wondering how people back home were managing without access.  

So now I’m still calling my representatives and donating, but I’m also looking for new ways to show solidarity with my son and with all the other people who are being pushed out in the cold. Because, as Jimmy Kimmel so beautifully stated, “We need to take care of each other.”  

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Oranges and Oranges

/ Picking My Battles


Sixteen year old Thing1 got into fitness in a big way last summer. He started working out like crazy. He spent the summer cutting hay (with a scythe) at his girlfriend’s house and jumping in ponds and rivers.

Just about the same time, he began having digestive issues that caused him to lose over 20 pounds in a few weeks — no mean feat for a kid who can seriously endanger the profit margin of any restaurant daring enough to put out an all-you-can-eat buffet.

Thanks to my job, we have excellent insurance, but it still took multiple visits to the ER and the regular doctor, along with a healthy dose of nepotism to finally find us the right specialist to hand us a diagnosis of Ulcerative Colitis.

At the time, all I could do was feel eternally grateful for our health plan and angry at a system that would have left Thing1 at sixteen without a colon if we hadn’t known somebody who knows somebody who could make something happen. I was angry for a while at the seeming apathy of the people in the system and not just on behalf of Thing1, but on behalf of the millions of Americans who have bad insurance or none at all. It left me wondering how many kids miss their potential because of lack of access to adequate care.

I still think about that every time we go for a checkup, wondering what we can do — aside from regularly calling our elected representatives — to change things.

Thing1 has clearly been thinking about it too, taking the ‘change the things I can’ approach to a life that now suddenly includes up to 12 pills a day.

At first when I saw his reaction, I thought I was worrying about oranges and he was thinking about apples. While I made my daily calls to my reps, he began researching his autoimmune disorder and adjusting his diet long with his workout. He googled and read. He experimented with different portions of protein and fiber, fruit and starches as he learned what his system would tolerate (incidentally coming up with a unified digestive theory that involves eating whole crates of clementines while simultaneously helping your parents run up a grocery bill to rival the national debt).

At the same time, we’ve started the time-honoured college search. T1 is a math fanatic, so we started looking at math/science schools, but he surprised us by announcing he wanted to study nutrition to help other kids who might be dealing with similar digestive issues. We’ve since signed him up for a course at the community college, and he’s even considering a blog with fitness and nutrition tips.

I finally realized T1 and I really were both thinking about oranges and oranges. We were just thinking up different ways to get to the good stuff under the skin.

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